Diagnosed with Wegener's GPA 3 years ago, I live in Dallas Texas. I really enjoy the outdoors, riding a bicycle, motorcycle and hiking. Wegener's is becoming a challenge to my life style.
I try to remain positive. I do feel very fortunate that this disease has not been worse. I do enjoy reading other's experience with this disease.
Hi EHLynnI was diagnosed with Wegeners in Nov 2015 as a 45yrs old male ,after approx 6 months of sinus trouble ,hoarse voice ,breathing difficulties ,severe weight loss and excruciating joint pain .I ended up taking myself to A&E after multiple Dr appointments proved fruitless even got accused of wasting an appointment,there the journey began I spent 16 days in hospital finally getting diagnosed and set up on a treatment regime of Cyclophosphamide and Steriods gradually changing to Azathioprine but still the breathing wouldn’t improve ,Until it was found out I also have Subglottic Stenosis of the airway which has required three procedures to widen it ,I spent a whole year off work but did return to full time as a truck driver to this day ,I have spent the last two years totally med free but due to the wegeners making an appearance in my sinuses again I have restarted Azathioprine and Steriods sorry for the long winded reply but what I guess I’m trying to say is you can still do all you enjoy just at a different pace I used to love running so now I just walk ,keeping active has helped me a lot hope your Wegeners improves to allow you to enjoy your past times
Best wishes
Russell
This might be of interest to you: powerbreathe.com/does-power...
You do what your body will let you. I was wheeled into hospital for 7-8 days last new year. Since March when I was allowed to start exercising again, to date I have ridden about 2500km plus some hiking. There are still bad days with sinuses and random joint pain but generally I find the exercise helps my physical and mental health.
Hi EHLynn. I was diagnosed with GPA 2 years ago. I was really poorly to start with after a culmination of Headaches, body aches shortage of breath and painful and red eyes. I was diagnosed by chance, GP was useless and I mean useless but hospital (after screaming to be referred) diagnosed fairly quickly and again like many others pumped full of steroids, courses of cyclophosphamide and after failure of Azathioprine put onto Rituximab. I am very lucky.
Most people on here have suffered much more than me, I haven’t had much renal involvement or lung issues so have kept relatively fit. Have embraced diet changes but I am finding motivation to exercise more and more difficult however my resolve hasn’t broken. There are days I just don’t want it, getting up off the couch is hard and this is medication related rather than the disease. You have to keep trying mate. Good luck buddy.
Nick
Thank you for your story and the encouragement!
Hi, I was diagnosed last year. My symptoms had become very serious during the pandemic so was hard for me to get referred. I got to the stage where I couldn’t walk without being in terrible pain. I cried so much with the pain. Once I got a referral 6 months later I was diagnosed with GPA & kidney involvement. I have been on steroids since & 6 monthly Rituximab infusions. I can honestly say I do get a little tired but apart from that I feel back to my normal self. I am now back at my Zumba classes & I work full time. Like yourself I do feel very lucky as some poor people have so much worse. I wish you all the best & hope you stay as healthy as you can.
I was in hospital earlier this year for three and a half weeks with kidney and lung involvement (following, eye, ear and nose problems) and was finally diagnosed. Was so weak and had lost so much weight and muscle, could hardly get up the stairs. On steroids and rituximab. Now I can walk e.g. 8 miles, and I do weights and pilates at home. I am fatter because of the steroids but also fitter and have some muscle back. I hope to maintain this and improve further if possible but who knows. I wish you all the best.
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